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Bill seeks to address health care disparities among people with disabilities in Bay State

Updated on March 22, 2016 at 2:32 PMPosted on March 22, 2016 at 2:30 PM

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State Senators Michael Barrett, D-Lexington, and Barbara L'Italien, D-Andover, testify on March 22, 2016 on a bill that would create a state office to reducing health disparities linked to race, ethnicity and disability.
(SHIRA SCHOENBERG / THE REPUBLICAN)

BOSTON - A fictional patient created by doctors at Baystate Medical Center in Springfield a few years ago weighed 200 pounds, was wheelchair-bound and needed a specialized medical evaluation. Researchers called 250 doctors' offices in four major cities to make an appointment, and 20 percent of the offices refused. Of those who agreed to an appointment, fewer than 10 percent reported having appropriate equipment or trained employees.

"The research is hair-raising," said state Sen. Michael Barrett, D-Lexington.

Barrett is pushing for a bill, S.1114, that would create an Office of Health Equity within state government that is tasked with reducing health disparities linked to race, ethnicity and disability.

"We know there's a terrible problem with respect to race and ethnicity. Now it's also clear people with disabilities don't get the same quality of health care as everyone else," Barrett said.

Today, there is a state Health Disparities Council, which is tasked with examining disparities in health care linked to race, ethnicity and disability. But the council does not have dedicated staff. The new office would provide that staff.

In the current legislative session, the House passed a bill that would create an Office of Health Equity to look at disparities linked to race and ethnicity. The Senate passed the bill and added disability and gender to the office's mission.

Barrett's bill, which had a hearing Tuesday before the Joint Committee on Health Care Financing, remains before the committee. Barrett said he hopes if the committee reports it out favorably, that would cause lawmakers who craft a final version of the legislation to include disability. Barrett said he also supports including gender in the office's mission.

Advocates and people with disabilities came to Tuesday's hearing to make their case. They argued that barriers like inaccessible doctors' offices and exam rooms and communications problems lead to worse health outcomes for people with disabilities.

Monika Mitra, associate professor at the Lurie Institute for Disability Policy at Brandeis University, said almost 1 million people in Massachusetts have a disability, and people with disabilities are more likely to report poor health.

Mitra said people with disabilities are more likely than the general population to miss a doctor's appointment because of cost and to have trouble accessing dental care. They are more likely to smoke and to be obese. Women with disabilities are more likely to have experienced sexual assault and physical abuse.

Many women with physical disabilities, including pregnant women, say they have never been weighed by a doctor, likely because doctors do not have appropriate equipment, Mitra said.

Lisa Iezzoni, professor of medicine at Harvard Medical School, said people with disabilities are less likely to get necessary cancer treatments, such as surgery or radiation, and more likely to die of certain types of cancer.

State Sen. Barbara L'Italien, D-Andover, who supports the bill, said people with disabilities are less likely to receive preventative care like blood pressure checks and cholesterol screenings. Research shows women with disabilities have lower rates of mammograms and pap tests.

Because clinical trials generally exclude people with disabilities, there has been less testing on how medications affect them. L'Italien said when her son was diagnosed with autism, he was given medication that had not been tested on children. She has a first grade class picture of her son "literally falling asleep" from medication, she said.

State Rep. Tom Sannicandro, D-Ashland, a lawyer who sponsored the bill in the House, recalled a story he heard from a woman whose mother had an intellectual disability. The woman told her doctor she felt a lump in her breast, but the doctor ignored her until the cancer metastasized and became untreatable.

Whether the problems stem from prejudice or from doctors not listening to patients with disabilities, Sannicandro said, "Science says their health care outcomes and treatment is dramatically different from a healthy individual."

Advocates say including disability in the new office's mission could help address these issues - through research, establishing educational curricula and best practices for doctors and nurses, and developing strategies to reduce disparities.

"The more that we can cross pollinate and share creative solutions that work and strategies that work...the better off we are," said Susan Abend, CEO of the Right Care Now Project, which advocates for adults with intellectual disabilities. "This is not a time to balkanize."

Roslynn Rubin, CEO of The Arc of Greater Waltham, which providers services for people with intellectual and development disabilities, said, "This is a group that is marginalized in every way in terms of health care....It's really a human rights issue."